ORCID

Abstract

PurposeThe purpose of this study was to gain deeper understanding of the experiences of occupational therapists and physiotherapists, working with those with atypical Parkinson’s conditions, within the UK. A literature review identified that research into these roles is limited and unrepresentative.Materials and methodsA qualitative approach, informed by hermeneutic phenomenology was used to guide the study design. Semi-structured, online interviews, focussed on therapists’ experiences of success and challenge, were completed with six physiotherapists, and three occupational therapists, experienced in working within this area of practice. The interviews were recorded and transcribed verbatim and were analysed using Braun and Clarke’s reflexive thematic analysis.ResultsFour themes were generated and discussed: (1) maintaining hope without giving false hope, (2) maintaining quality of life despite deterioration, (3) maintaining empowerment and choice despite loss of control, (4) maintaining effective working despite variable resources.ConclusionsParticipants’ accounts of success and challenge reveal a complex landscape of tensions that must be negotiated and balanced within their practice. Insight is gained into some of the mechanisms involved in maintaining a patient’s hope, their ability to participate and their sense of identity, despite the devastating losses associated with these conditions.IMPLICATIONS FOR REHABILITATIONExploration of participant’s experiences of success and challenge as occupational therapists and physiotherapists working with those with atypical Parkinson’s conditions, reveals some of the mechanisms which underlie their complex practice.Individualised, client centred care, which focuses on quality of life and maintaining patients’ engagement with valued activities, and connection with others can maintain hope despite the progressive nature of these conditions.Building a therapeutic relationship over time, in which patient’s choices and preferences are respected, can facilitate acceptance, and empower patients to make timely and informed decisions at all stages of their condition.Communication and joint working with the wider multidisciplinary team is key to successful and coordinated patient care.Specialist knowledge of these conditions enhance practice and allows for the balance between risk and quality of life to be maintained.

DOI

10.1080/09638288.2025.2462200

Publication Date

2025-02-17

Publication Title

Disability and Rehabilitation

ISSN

0963-8288

Keywords

Atypical Parkinson's conditions, occupational therapy, physiotherapy, rehabilitation, qualitative research, participant experiences, thematic analysis

Creative Commons License

Creative Commons Attribution 4.0 International License
This work is licensed under a Creative Commons Attribution 4.0 International License.

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